Mastectomy for DCIS: physical and emotional recovery

At home, most women said they were careful not to lift anything heavy or over-exert themselves physically, including with housework. Some said they had a bit of pain or discomfort around their wound and under their arm to begin with, and took painkillers to ease it. Many said they had support from family until they felt able to do everything themselves again. A few said they had a visit from a district nurse.

Gillian is a married housewife with three adult children
Ethnic background / nationality' White British

I went home and I had someone keep an eye on my dressing. I may have had some internal sort of stitching but I didn’t have any external stitches. I just had like a sticky see through plaster, I suppose you call it, over the top of the wound. I went home with a drain. I had one drain in. I was in the hospital on the Friday and I actually went home Saturday morning. So it wasn’t very long in hospital at all. And for up to about a week, I had a district nurse visit, just to keep on eye. And eventually the drain was removed. I would say it was slightly uncomfortable, the drain. It was a tube that came from the area where you’d had the operation, just under your arm. And you had a bottle, the tube went to bottle and that was just to get excess sort of fluid from the area.

I didn’t find the mastectomy painful particularly, if at all really. I was very surprised at that. I thought I was going to be in pain for quite a while, having had part of my body removed. But to be honest, I can honestly say I was hardly in pain at all. They gave painkillers obviously straightaway as soon as the surgery was finished. They gave me painkillers to take home. I just took one or two of those. But I sort of phoned the breast care nurse up and said, “Do I need to take these?” And they said, “Well try without and see what happens.” And I found that I wasn’t in any pain at all. So I don’t think I had more than four all together after the mastectomy. So I just didn’t find that painful, thank

goodness.

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Age at interview:

67

Sex:

Female

Age at diagnosis:

66

Background:

Hilary is a married, retired secretary with three grown up children.
Ethnic background / nationality' White British

You mentioned that a district nurse was coming every day to the house?

To the house, yes, for the first week.

Yeah, once you were back home?

That’s right. Once I was back home. Because I just felt, I must admit I just felt tired and I really couldn’t understand why I felt so tired. But then I thought, “Well it’s probably the anaesthetic that I’d had.” So, well I mean I sat down a lot the first week. I didn’t really want to do much. Of course, Christmas come along as well so I was at the hospital Christmas day morning, which my son took me down. But no.

And when you came home, how did you feel physically then in terms of moving your arms and …?

My arm was very stiff. I used to do my exercises and I could sort of only raise it a little bit. But over the, and I think the massaging of my back really helped that. And because I hadn’t had anything done on the lymph gland, because I understand if they have the lymph gland done it makes things a little bit worse. So, yeah, I could just, you know, I couldn’t reach, naturally I couldn’t reach anything, couldn’t carry anything so …

So who, was anybody at home? Your, was your husband at home with you?

Yeah, my husband was with me. He drove me everywhere. And then I used to have to go and visit the doctor. And then he used to take me. Christmas Eve I tried to do a bit of Christmas shopping but after I’d walked for a little bit I’d had enough [laughs]. So, it is quite, it does sort of take your energy a little bit.

Yeah. And how long did you feel you needed to kind of rest and, you know, do your exercises at home, not take on too much?

I think it was a good sort of three weeks. Yeah, a good three weeks. I think it was about six weeks when I started driving again. I’ve got an automatic so I hadn’t got to worry too much, well, my right hand, you use the left anyway. But no, I felt happy, quite comfortable to drive after about six weeks.

Yeah. And you could do more around the house, or pretty much back to normal?

Yes, even now I’ve to be careful if I’m pushing the vacuum. If I, I know when I’ve done too much and this is when you sort of read your own body really I suppose. Again because I’d never, I’ve been so lucky in my life, I’ve been so, I’ve never had any sort of, well I haven’t had any illnesses at all. So that’s when I was, I thought to myself, “Yes, my body’s telling me to stop now.” So I used to just do a little bit, perhaps a couple of hours and then that was it then. So, you know.

Yes. And well, was there anybody here to help you with the housework or you, you know, you managed?

Yes, yeah, I managed, yes. My husband was very good, he did the vacuuming. We laughed really because Christmas Eve I was just pottering a little bit in the kitchen, Christmas day I should say. And I couldn’t cut my cauliflower because that was just using my arm [laughs] and we laughed about that. I had to shout, “Would you come and cut this cauliflower please?” [laughs] But no.

Most women noted that they recovered well, one saying she was playing sports again six weeks after surgery. A few women, though, said they had problems with their arm, such as cording, which feels like a tight cord running from the armpit to the back of the hand. It is thought to be due to hardened lymph vessels and can sometimes make it difficult to move the arm. Physiotherapy can help and sometimes antibiotics may be prescribed. The pain usually gets better gradually over a few months, but can sometimes come back.

Hilary is married and a retired teacher with two adult children.
Ethnic background / nationality' White British

I did have a problem with cording so I couldn’t stretch my arm properly. So I went for physio; that didn’t make a lot of difference. I did all my exercises and it was just one of those things. And I had acupuncture provided by the hospital, and that was excellent. And in the end they did a little minor op to snip it under the arm so I could get the stretch back. And that’s fine now. It’s almost exactly the same, it’s probably about quarter of an inch difference. But before it was about, oh about four inches difference. Regardless of how much exercise, it just wouldn’t stretch. It was like a thick band. But I didn’t get any lymphodema. The lymph nodes that they took out were clear, so that was all good stuff. And I went back for a couple of regular mammograms and it healed up. I’ve got a little bit of fluid that collects under the arm, a bit but that’s only minor, its not sort of massive amounts. But it is there, it’s a bit sort of wobbly.

I found with the cording that I put up with it for quite a while. And then said, you know, this is really getting to me now because I can’t move my arm, and if I can’t put cups in the cupboard and this sort of thing. And by the time I got through to them, they said, “Well, you know, this is really quite bad, it does need seeing to.” So I think you’ve got to trust in what your own feelings are. And if you feel it’s not right for you, don’t worry about a making a fuss. I think the hospitals generally prefer to deal with things at an earlier stage, rather than later on.

The area around the wound is bruised and there may also be a build-up of fluid, which can make it swollen and puffy for a while. This should gradually disappear over a few weeks. Occasionally, quite a lot of fluid can build up in the area around the wound. This is known as a seroma. It may need to be drained off by a nurse or doctor. Some women who had problems with their arm after surgery had physiotherapy. Many also talked about exercising to help keep their arms mobile. Some said they exercised regularly for longer than was suggested because they were keen to look after themselves as much as they could. Several also recommended looking after the mastectomy scar by massaging it with cream.

Rachel is a married household manager.
Ethnic background / nationality' White British

So I was only in from the Wednesday till the Sunday morning. So four nights. Everything seemed to go okay. I was ironing again within three weeks. And certainly within eight weeks I was gardening again. And I’ve been renovating this floor and stripped it all back. So I’m back to normal but I still do my exercises. I still finger-walk the wall because there are some days I still can’t hit my pencil mark so I think if, if I were talking to any body who was just going through it, I’d say, “keep going with them”.

I’m going to do it for twelve months. One physio said to me or the breast sister said after ten weeks “you can stop your exercises”. But I had to go back because I’d had this tendon which is, it had gone by the time I went back to hospital but it was definitely up and I’d not been able to get rid of it for weeks and weeks and when I got to hospital of course it had gone. But she said that some countries do their exercises for nine months. They don’t here. So I thought well I still massage, I still do scar massage twice a day.

On yourself?

Yes, yeah on my – I use cream and I do scar massage and I do my exercises.

Yeah, that’s good.

I try and not eat too much.

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Age at interview:

57

Sex:

Female

Background:

Ethnic background / nationality' White British

No problems in the hospital. When they took the bandage off I could see the scar and everything. What I wasn’t comfortable with was the fluid build up especially under the arm. And it was quite painful, and also where the drain went in to the centre, where the nipple had been, there was quite a bit of pain there and it wasn’t pleasant.

I would say I was in hospital for ten days and the reason being that the fluid wasn’t going down enough and they weren’t prepared to let me out until the fluid had gone to a certain level, but did explain that I may have to come back again because of the fluid up.

And it was painful, what I wasn’t expecting was the pain that I really did have when they took the drain out where the nipple part was. In fact I nearly fainted with it and I thought I had a good pain threshold, it was awful. But it was done and then they took the other drain out, which was no problem at all.

And there was a little bit of fluid and everything seemed fine, and as I say I’d had all the information and I’d managed to, you know, ask the questions I thought were relevant. The fact that cancer was there and it had gone, that was all I was concerned about.

However when I did go home there was a further build up of fluid and I was very lucky that at my local GP practice there was somebody there who could take the fluid away. And it was a couple of times I’d had it done and it was painful. But as I say, as it went down I felt fine.

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Age at interview:

51

Sex:

Female

Age at diagnosis:

51

Background:

Maisie is a married child minder with four adult children.
Ethnic background / nationality' Jamaican

I came home I had to sleep on the sofa because I couldn’t sleep upstairs in bed because I couldn’t lie down flat because of the cut and everything. So I ate all the food that you didn’t think of eating, like carrots and all of that rubbish which is good for you. And spinach I had, you know, because during the day I had spinach, carrots, leek, fish, everything in the same stuff so that my body can get. I didn’t eat any meat or anything, just fish. I ate a lot of fish and a lot of spinach and yoghurt. And noodles and stuff. I don’t think I’ll eat noodles after this. But I still have to eat it now to get my body ready for the chemo.

And I think I came out on Boxing, I think two days after that we went to get my husband, this was in the night. Because I didn’t want to see anybody, anyone you know, because I didn’t tell anyone on the street that I was ill. So we used to go walking about seven o’clock at night, this was in the winter. And I used to take my time, you were just walking up the road, just for me to get some exercise, you know. So we’d do all that for, and I came out on Christmas day, we did all that walk up and down the street, he [husband] takes me when he can, you know, because he took time off work, which is really good. His bosses allowed him to do that. And walk up and down all, oh that was, even when it was snowing and raining.

I just wanted, I just had to get out because if you don’t get out you just get into a rut, you know. And I used to get up the same time in the morning, at 7 o’clock, because that was my routine because of my work. I’d get up at seven o’clock. And I’d just get up and get on with it, it’s just what I have to do.

Many women said that, as well as recovering physically, they also had to come to terms with having had a mastectomy, several saying that the physical recovery was easier and quicker than the emotional. Everyone reacts differently to having a mastectomy. Some women said that, because their main fear was having cancer, having a mastectomy was something they accepted with a bit of time. A few woman with young children said their main concern was their children. Two younger women said that, for them, the thought of having a mastectomy was actually more difficult than living without their breast.

Jane is a married library manager.
Ethnic background / nationality' White British

I’ve thought since, I know that some people I’ve talked to have been fairly surprised that I was so matter of fact about having a mastectomy. And I think that’s due to two things really. I think it’s due to the fact that I come from a slightly medical family so it didn't frighten me as a procedure. And also because I’m in my fifties and happily married and I’m not, you know, a twenty-nine year old looking for a boyfriend or anything like that. And if I’d been twenty-five and I probably would’ve been a lot more worried and a lot more concerned about how I was going to look afterwards and so on. So those would be big issues. They just weren’t particularly for me.

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Age at interview:

42

Sex:

Female

Age at diagnosis:

42

Background:

Jo is a married mother with two young children.
Ethnic background / nationality' White British

I definitely would say to anyone who’s having it, it’s not a huge deal. Honestly it isn’t. But it’s like losing anything, you will grieve. Because you can’t just do that, and it goes quite deep. You know….

It was fine on the day. I lost my sleep. Everyone’s sleep goes of course. I completely lost my sleep. I couldn’t sleep at all. I was so bloody terrified which is unusual because I have had a lot of illness in my life. But I was just scared for the children. And that again, that is the main difference I think between the old and younger woman is, your main concern is to be alive for your children. You must be there for them. And it was just horrendous.

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Age at interview:

43

Sex:

Female

Age at diagnosis:

41

Background:

Felicity is a married health improvement practitioner with two children.
Ethnic background / nationality' White British

I think the time before the mastectomy was much harder than the actual reality because again I had really good care and I was in hospital for five or six days in [hospital name]. There were no complications and the nurses there were fantastic. I had my own room and I was very, very well looked after. So that was really good.

And I think the worry about it was much bigger. It was hard to think afterwards, the whole body image thing but I've got two small children as well. So you just have to get on with it.

So I was at home after that. I'm just trying to remember, piece it together. And when I went back again, my whole breast had been completely wall to wall covered with DCIS. And I'd obviously made the right decision then to have that mastectomy. I was very lucky that it didn't go into my lymph nodes. They did remove some of my lymph nodes but it hadn't gone through so they only removed two or three. So I was very, very lucky but because it had gone right to my chest cavity, my wall, my muscle, I had to go and see the oncologist and get radiotherapy.

For many women, though, losing a breast was very emotional and difficult, and they talked about the different feelings they had after surgery and over time. Some women felt that losing their breast was like a bereavement and they had many different feelings, including anger and sadness. Several said they felt anxious and depressed afterwards and counselling or joining a breast cancer support group had helped. Many said they would have liked to talk to other women with DCIS (see Support from other women with DCIS or breast cancer).

Gillian is a married housewife with three adult children
Ethnic background / nationality' White British

I’ve had lots of emotions I think with having had my breast removed. I’ve discovered that it is like a bereavement, and that is the nearest thing I can describe it to. Yes you’ve not lost a person. But you have lost a part of yourself and it’s a part of yourself that you’ll never have back. And it is an important part, I feel, to a woman to lose because it is part of being a woman or at least a lot of women do feel that. Some probably don’t. But I did feel that. And I did feel that my body didn’t look as nice as it was before. It did matter to me dreadfully. But I decided it was important that I had the operation. And it would prolong my life I felt to have the operation and that meant I could spend my time with my family and my friends. And that was important.

Like a bereavement you go through various stages. I suppose anger is probably one as to why it’s happened to you and how you’d like to have your breast back please. But no way is that happening. I don’t think I really let the anger out because I’m someone who feels it’s not right to scream and shout and make a fuss. But there were times when I was alone and I did just quietly punch a pillow [laughs]. But I didn’t actually express great anger. Inside I felt very sad. I think more than anything I’ve been sad and very down about the fact that I’ve lost my breast. And it was also sudden as well, unexpected. And I got very down. And because I got down, I then found I couldn’t really cope with day-to-day things. And I don’t think I felt particularly happy. I did what I could but normally I would help everybody. I’d run around after everyone. I’m very organised. And I just wasn’t feeling myself. Wasn’t able to do all the things I normally did. And struggled and struggled alone with that.

Eventually I went to the doctor. So I had the operation for the mastectomy in October. In the March I went along to the doctor and explained that I was feeling very down. And really I was hoping, and I may not perhaps been strong enough in saying this to my doctor, but I would’ve liked counselling. I really would’ve liked some counselling. Unfortunately I think my doctor felt she’d already offered counselling because I’d asked for counselling before the mastectomy. And because I’d then cancelled that, obviously because it wasn’t in time, I think therefore there was a bit of misunderstanding there. I really wanted counselling.

…It is quite a big thing to go through I think. And, emotionally, I don’t think I realised how big emotionally it was going to be. I was expecting to be unhappy about it, definitely, absolutely, definitely. But it’s taken me a year to get over it and if you manage to get over it in less than a year, I take my hat off to you.

I’ve also heard that cancer and mastectomy is different to other cancers emotionally I mean, obviously there’s an emotion if you’re told that you may not have long to live or it’s very aggressive and whatever. But to lose your breast is quite a big deal to me. You know. To lose the way you’ve looked, even though you’re getting older, when you get old, you gradually get old. When you lose your breast it happens over night. And it’s a big deal. It’s a big deal. But you can get through it.

With hindsight, a few women said they found it difficult to accept they’d had a mastectomy and they wondered if it had really been necessary for a precancerous condition.

Rachel is a married household manager.
Ethnic background / nationality' White British

Having read the information what what were your feelings?

I can still go back into it. I try not to think about that because you’ve got to tell yourself that they’re spending at least two grand on an operation, they wouldn’t spend it [laughs] if it wasn’t necessary so it’s just the way my, I’ve taken it on board.

Yeah. Yours was high-grade wasn’t it, so does that help you feel?

Yes it does help me feel that it was a bit more justified, I also, and I’m not quite sure how I’m going to do it, whether I’ll wait until I see the surgeon with the notes, but I want to know about those five samples and what they found on the biopsy. I didn’t know what to ask at the time, I mean we were just, I think we just because, when you’re suddenly faced with an operation, that sort of question doesn’t really enter your head.

Have you felt that the more information you’ve read the more you want to ask questions and the more questions you have?

I haven’t got, I think questions have been answered by the information I’ve gathered. I wished I’d have known some of it before hand that’s for sure.

If you’d known some of this before hand what might, is there things you would have done differently?

I might have waited, whether I could have persuaded my husband or not I don’t know but I might just have waited that bit longer. I’m not so sure that they know enough about it, and I, especially since the lady that was sixty two that had, she was scheduled for her op an hour after me, she had to go back down to the breast care unit, to have her little piece pinpointed by wire to localise it. Something tells me that there’s something wrong when they’re doing it, they will have done a, they will have checked that out. What if it was nothing, I just think that maybe they’re being a bit over, over-doing it a bit. ‘Cause you’re certainly becoming a statistic.

It’s more I’d like to know the, it’s the biopsy one I think really now, and just to get the results after surgery, just to make sure I’ve got that written down correctly. And maybe know whether or not, I think I know that they’ve done the right thing, I think I know that they’ve done the right thing. I think it’s just me that feels that the operation might have, I just thought it was unnecessary. It felt like they were using a sledgehammer to crack a nut. That’s how it felt really.

When you got home, I mean, all that time you were dealing with the physical side because there was no real time to think very much was there, when did you really start thinking about the emotional side?

When I got home...

Yeah.

When I got home...

Yeah.

Yeah.

What kind of things were important, were you know, mattered?

Well, ‘was this a sledgehammer to crack a nut?’ I wrote a few things down [flicking through papers] this is what I said to Eileen [DCIS Information Project founder], she very kindly sent me a copy back, ‘cause I didn’t think it would come to anything so I’d written it again. I thought you might like to take it with you. But yeah it was just really, just I think it just happened so quickly. I looked in my diary this morning, but I didn’t- wasn’t putting nought in there it was

For a few women, their experience of having a mastectomy was greatly influenced by their perception of the care they had received in hospital. While most were happy with the care from doctors and nurses, some felt that staff could have been more compassionate. One woman sought a second opinion because she felt dissatisfied with a consultation with her surgeon, which she felt had been rushed and hadn’t give her the information she needed. A few said they had been made to feel like ‘a piece of meat’ rather than a person and felt that their care could have been more sensitive.

Margaret is a married housewife with two adult children
Ethnic background / nationality' White British

I suppose all I wanted to say was that I feel that I’m getting down to saying some things that, yeah, it was about the personalities that I met and I don’t want to talk about that on camera. There we are. So, as I say for me, you know, and I know as I say, I’ll repeat, and my mates at work will say, “Well why are you getting yourself in such a stew? Why are you worried about what they, what your reaction is with them?” And all that. And I say, “Well that to me is, you know, that’s me as a person. I can’t…” And that’s been, and that has nothing to do with, I think with DCIS or anything, it’s to do with …

What they were thinking of how you’re coping?

Yes. And also I felt some times that, you know, as I said, probably in the clinics they have to deal with, ‘I’ve been lucky. What’s this woman complaining about’, you know? And that’s the feeling I was getting, that may be totally wrong. And so, you know, you’re not ill, I was told. No, I’m not ill but you’re doing something that will make me ill perhaps.

So, in a way, as I say, that to me has been one, you know, I’ve had big, I know I’ve had big issues about it but it’s not all to do with the DCIS but I suppose it is in a way because if it had been something I could see on my body or, you know, was in pain beforehand …. Then I’d want something done about it, wouldn’t I? But, the way it happened, I wasn’t in pain and I didn’t see anything and therefore I didn’t want anything to happen [laughs]. As I said, you know, life is going to be, more things to happen so it’s helped me in a way, I shall be, I won’t be less, I’ll be less intimidated by hospitals, less intimidated by things. So, that’s good.

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Age at interview:

52

Sex:

Female

Age at diagnosis:

43

Background:

Jacqui is a widowed teacher with two adult children.
Ethnic background / nationality' White British

My experience in the, when I actually went down to theatre, that wasn’t a very nice experience either. When I went for the anaesthetic, the anaesthetist didn’t treat me very, well he, I felt as if I was a piece of meat to be honest. He said “which one is it” and “we’ve got to put a cross, put a mark on it” which I realise they have to do to make sure they’ve got the right one. But unfortunately I was left with that, a nurse should have been with me right the way through, but I was left with two men. I was made, as I say, just to feel like a piece of meat and that, since, has given me a terrible fear of having to go through any operation since that experience. I wasn’t treated very good by the anaesthetist, but as regards the consultant, I think he’s brilliant, you know. A lot find him harsh, but he’s straight to the point and doesn’t pull any punches and that’s what I like. I would rather know than not know, cover things up, you know.